Traumatic Brain Injury
By Family Caregiver Alliance and was reviewed by Catherine Sebold Updated April, 2020, by Carol Welsh, MPA, CBIS, Services For Brain Injury, San Jose, CA.
Each year, an estimated 2.5 million people in the U.S. sustain a traumatic brain injury (TBI) but the total incidence is unknown. The impact of a brain injury is often life-changing for survivors, families and caregivers. This fact sheet discusses traumatic brain injury and its consequences and provides information about the helpful resources available to families caring for a loved one affected by TBI.
Traumatic brain injury is considered an Acquired Brain Injury. It occurs when a blow or jolt to the head results in damage to the brain. TBIs range in severity from mild to severe. It is important to note that no two brains are the same, no two injuries alike. Therefore, each individual’s brain injury is completely unique. This presents a distinct challenge – unlike any other organ in the body − for both diagnosing specific deficits from the injury, and determining the exact rehabilitation needed.
Mild TBI occurs when a person has a brief change in mental status or loss of consciousness. The most common type of brain injury, a concussion, is classified as a mild traumatic brain injury. Mild TBIs often go undiagnosed, and consequently the person suffering the injury loses out on the benefits of rehabilitation and medical care. Even mild TBIs can have lifelong effects which can be mitigated with proper care. Severe TBIs may involve loss of consciousness for hours or weeks and can result in permanent disability.
Any TBI, whether mild or severe, can result in short- or long-term disability.
There are many different types of traumatic brain injury, including the following.
- Concussions: Most common type of TBI
- Penetration injury: Bullets or other objects entering the skull
- Contusions: Bleeding from blows to the head
- Diffuse axonal injury: Damage from tearing of the brain tissue inside the skull
- At least 5.3 million Americans, approximately 2% of the population, currently live with disabilities related to brain injury.
- Males are more than twice as likely as females to experience a TBI.
- TBI is most common among adolescents (ages 15–24) and older adults (75 and older).
- The most common causes of TBI are:
- Falls (40.5%);
- Unintentional blunt trauma (15.5%);
- Motor vehicle accidents (14.3%);
- Violence (10%).
- TBI is a contributing factor to a third (30.5%) of all injury-related deaths in the United States.
- The direct medical costs of TBI − and additional related costs such as lost productivity − total over $60 billion in the United States per year.
A TBI may result in mild, moderate, or severe changes in one or more abilities, such as thinking, speech, physical functions, and social behavior. The consequences of TBI can be lifelong for some people, while others may be able to resume activities they enjoyed before the injury occurred. If an injury is severe enough, even from a concussion, the person may never return to functioning as they did prior to injury.
A partial list of cognitive changes (or changes in thinking) that can occur due to a brain injury include the following.
- Shortened attention span
- Memory problems particularly short term memory
- Problem-solving difficulties and trouble following directions
- Poor judgment
- Partial or complete loss of reading and writing skills
- Language problems, including communication deficits and loss of vocabulary
- Inability to understand abstract concepts
- Difficulty learning new things
Some of the physical changes that can occur due to a brain injury can include the following.
- Muscle coordination problems, including swallowing problems
- Full or partial paralysis
- Changes in sexual functioning
- Changes in the senses (vision, hearing, touch, taste, etc.)
- Sleep problems
- Speech difficulties and word finding problems
Personality and behavioral changes may be subtle or severe and can include the following.
- Difficulty with social skills
- Inability to empathize with others
- Tendency to be more self-centered
- Inability to control emotions, emotional lability
- Increases in irritability and frustration
- Inappropriate and/or aggressive behavior, easily angered
- Extreme mood swings
- Depression (individuals with TBI are considered to be at a high risk for depression)
For further information about how to cope with behavior problems that result from a TBI, see the FCA fact sheet Coping with Behavior Problems After Head Injury. Additionally, a free, comprehensive Brain Injury Handbook, created by the Schurig Center for Brain Injury Recovery, is an excellent, practical resource to help navigate the rehabilitation process.
Prognosis (or Chance of Recovery)
It is difficult to predict how well someone who has had a brain injury will recover, partly because there is no test a doctor can give that can reliably predict deficits and recovery. In fact, brain images can appear normal following a mild or moderate brain injury. The Glasgow Coma Scale is used to determine the initial severity of a brain injury. It is often used at the scene of an accident or in the emergency room. This scale uses eye movements and ability to speak and move other parts of the body to determine the severity of the injury.
Your loved one’s prognosis will depend on many factors, including the severity of the injury, the type of injury, and what parts of the brain have been affected. Prompt diagnosis and treatment will help the rehabilitation process. A neuropsychological evaluation is useful for determining how the brain injury has affected areas of cognitive function and provides important guidance in determining necessary rehabilitation. Ask your medical team about a neuropsychological evaluation and other testing that can be helpful, including tests for vision, hearing and balance.
Recovery Tips for People Who Have Had a TBI
The recovery process is different for everyone − just as no two brains are the same, and no two injuries are alike. Recovery is typically lengthy — from months to years — because the brain heals slowly and differently than any other organ in the body. Below are tips for the person with a brain injury to help with recovery.
- Get lots of rest.
- Avoid doing anything that could cause another blow or jolt to the head.
- Ask the doctor when it’s safe to drive a car, ride a bike, play sports, or use heavy equipment.
- Do not drink alcohol or abuse drugs; these can be particularly hard on an injured brain.
- Write things down, use a calendar, maintain a daily journal if possible, and use smartphone alarms to help rebuild memory function.
- Get in the habit of regularly repeating the actions and activities that improve functioning. Repetition is key to rehabilitation as the brain heals.
- Ask the doctor to recommend rehabilitation services that can help recovery.
- Store important items, such as your keys or your wallet, in the same designated place to keep from losing them.
- Keep a steady pace. Take breaks as needed.
- Focus on one thing at a time.
- Perform tasks in a quiet, non-distracting environment.
- If feeling irritable or angry, try relaxation techniques and/or walking away from the situation.
- If you are irritable or having trouble concentrating, are you getting enough sleep?
- If you are having trouble sleeping, are you drinking energy drinks or alcohol?
The goal of rehabilitation is to help your loved one live and function as independently as possible. Rehabilitation helps the body heal and assists the brain in relearning processes so recovery is as efficient as possible. Rehabilitation will also help the person with TBI learn new ways to do things when previous abilities have been lost.
After your loved one’s initial life-saving treatment at the time of the injury, s/he will most likely start a rehabilitation program and will work with a team of specialists. The person with a TBI and his or her family are the most important members of the rehabilitation team. Family members should be included in the rehabilitation and treatment as much as possible. Some of the other professionals who may be part of this team include the following.
- Physiatrists or Physical Medicine and Rehabilitation (PMR) Physicians: Doctors who are experts in rehabilitation medicine who typically oversee the rehabilitation process.
- Neurologists: Doctors who are trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, seizures, spinal cord, nerves, and muscles.
- Occupational, Physical, and Speech-Language Therapists: Therapists who help the person regain cognitive and physical abilities, and communication and behavioral skills.
- Neuropsychologists: Specialized psychologists who focus on thinking skills and behavioral issues.
- Vocational Rehabilitation Counselors and Job Coaches: Employment professionals who help with regaining job skills and job retention post-injury.
It is important to remember that rehabilitation may take years, and that your loved one will benefit from the ability to receive rehabilitation services throughout this time. Appropriate programs and treatments will also change as your family member’s needs change.
A variety of treatment and rehabilitation programs may help your loved one. Below are some of the different types of rehabilitation facilities.
- Acute Rehabilitation: Intensive, in-patient, hospital rehabilitation program
- Comprehensive, Long–Term Rehabilitation Program: Provides comprehensive rehabilitation including speech, occupational and physical therapies; psychological counseling; daily living and independent living skills; behavior modification and group socialization; pre-vocational and vocational rehabilitation programs; employment placement with a job coach. Usually an outpatient weekday program; but may be in a rehabilitation facility.
- Day Treatment Programs: Provide basic rehabilitation, behavior modification and group socialization during weekdays.
- Coma Treatment Centers: Coma-specific medical care
- Transitional Living: Nonmedical residential programs that teach independent living and community reintegration skills.
- Long-Term Care and Supervised-living Programs: Residential facilities providing care and rehabilitation to people with TBI who are not able to live independently.
TBIs can be life altering. Many serious injuries can either be prevented, or at least lessened in severity, with the proper precautions. The following are tips for minimizing the risk of sustaining a TBI.
- All passengers should wear lap belts and shoulder harnesses in the car.
- Use properly installed infant and child safety seats. A representative of your local police department or highway patrol can show you the proper method of installation.
- Avoid drinking and driving or driving under the influence of drugs or medications.
- Use helmets for motorcycle and bicycle riding and other recreational sports.
- Do not use handheld devices or smartphones when driving or engaged in activity, not even walking. A smartphone can distract you just long enough to get in an accident, or fall, or get hit in a crosswalk.
To help prevent falls, individuals should:
- Use the rails on stairways.
- Install adequate lighting, especially on stairs for people with poor vision or who have difficulty walking.
- Place bars on windows to prevent children from falling.
- Do not place obstacles in walking pathways.
- Exercise to help with strength, flexibility and balance
When someone suffers a TBI, the entire family is affected. Studies show that caregivers of people who have suffered a brain injury may experience feelings of burden, distress, anxiety, anger, and depression. If you are caring for a partner, spouse, child, relative, or close friend with TBI, it is important to recognize how stressful this situation can be and to seek support services.
Services that may be most helpful to you include in-home assistance (home health aides or personal care assistants), respite care to provide breaks from caregiving, brain injury support groups, and ongoing or short-term counseling to adjust to all of the life changes post-injury. You also may need to ask your support system of family, friends, and community members for help with your loved one’s care, so that you don’t get burned out. (See Family Caregiver Alliance’s fact sheet: Taking Care of YOU: Self-Care for Family Caregivers for additional tips on taking care of yourself.)
In your role as a caregiver, you will probably find that it can be difficult to get appropriate and adequate services for your loved one. It is important to know that you will most likely need to advocate for your loved one and be persistent in your search for assistance. You should use your network of family and friends, as well as professionals, to get tips about available resources and provide support.
A free, comprehensive Brain Injury Handbook, created by the Schurig Center for Brain Injury Recovery, is an excellent, practical resource to help navigate the rehabilitation process.
Veteran Affairs Response to TBI
Due to the high incidence of TBI in the military field, Veteran Affairs (VA) and other sectors of the US military health system have become active in addressing the issues surrounding TBI.
Active duty and reserve service members are at an increased risk of sustaining a TBI compared to their civilian peers. This is a result of several factors, including the specific demographics of the military; in general, young men between the ages of 18 to 24 are at the greatest risk for TBI. This is coupled with an increased risk of being deployed to areas where they are at risk for experiencing blast exposure(s, )and the potential danger of even the most common operational and training activities that are common in the military.
Research conducted in 2005 by the Defense and Veterans Brain Center (DVBIC)( in) found that blasts in combination with (other mechanisms—what does this mean) are a leading cause of TBI for active duty military personnel in war zones. Additionally, people with previous TBIs are at higher risk for suffering subsequent injuries which can be more symptomatic, compared to those with their first TBI.
The VA has implemented an integrated, nationwide system of care for veterans and active duty service members recovering from a TBI. This system is designed to provide care for persons with a TBI as an isolated condition(,) or in the context of additional traumas or comorbidities. It consists of more than 100 VA medical centers, each offering specialized rehabilitation care by an interdisciplinary team.
Various steps have been taken to improve identification and treatment of TBI.
- In 2007, the VA initiated a TBI screening for all veterans.
- Veterans with a positive TBI screen are referred for a comprehensive evaluation with specialty providers who determine a definitive diagnosis.
- An individualized Rehabilitation and Reintegration Treatment Plan of Care is developed for those Veterans that need ongoing rehabilitation services.
Useful Resources and Services for People with TBIs and Caregivers
National Disability Rights Network Protection and Advocacy for Individuals with Disabilities
Protection and Advocacy (P&A) System and Client Assistance Program (CAP)
This nationwide network of congressionally mandated disability rights agencies provides various services to people with disabilities, including TBI. P&A agencies provide information and referral services and help people with disabilities find solutions to problems involving discrimination and employment, education, health care and transportation, personal decision making, and Social Security disability benefits. These agencies also provide individual and family advocacy. CAP agencies help clients seeking vocational rehabilitation. For more information on P&A and CAP programs, see the National Disability Rights Network website, ndrn.org.
Traumatic Brain Injury Model Systems
Funded through the National Institute on Disability and Rehabilitation Research, the TBI Model Systems consist of 16 TBI treatment centers throughout the US. The TBI Model Systems have extensive experience treating people with TBI and are linked to well-established medical centers that provide high quality trauma care from the onset of head injury through the rehabilitation process. For more information on the TBI Model Systems, see tbindsc.org.
Brain Injury Association of America
A national advocacy and awareness organization that develops and distributes educational information about brain injury and resources, legal rights, and services. The Association provides a variety of information regarding brain injury and has state affiliates throughout the US.
Brain Injury Association of America (BIAA) Chartered State Affiliates
BIAA is a national program with a network of more than 40 chartered state affiliates, as well as hundreds of local chapters providing information, education, and support to individuals, families, and professionals affected by brain injury. To locate your state’s TBI programs that can be of assistance, see the Brain Injury Association of America’s online listing of chartered state affiliates at biausa.org/state-affiliates.
Social Security Disability Insurance (SSDI) & Supplemental Security Income (SSI)
It is possible that your loved one may be entitled to SSDI and/or SSI. SSDI and SSI eligibility is dependent on a number of factors including the severity of the disability and what assets and income your loved one has. You should contact the Social Security Administration to find out more about these programs and whether your loved one will qualify for these benefits. For more information on SSDI and SSI, see ssa.gov.
Centers for Independent Living (CIL)
Some families have found that it is important to encourage their loved one with a TBI to continually learn skills that can allow them to live as independently as possible. CILs exist nationwide to help people with disabilities live independently in the community and may have resources to help your loved one reach a goal of living alone. CIL services include advocacy, peer counseling, case management, personal assistance and counseling, information and referral, and independent living skills development. For more information on the national CIL system, see virtualcil.net/cils.
Defense and Veterans Brain Injury Center
Serves active duty military, their dependents, and veterans with traumatic brain injury. Offers evaluation, treatment, follow-up care, educational materials and
Brain Injury Resource Center
Services For Brain Injury − San Jose, Oakland, Santa Cruz, CA
A non-profit serving the Greater Bay Area with comprehensive day-program rehabilitation for any type of brain injury at any stage. Programming spans from post-acute and medically stable with daily living independent living skills, and behavior modification and group socialization skills; to pre-vocational and vocational services including employment placement with a job coach. Staff includes licensed psychologists, physical, occupational and speech-language pathologist; and vocational rehabilitation and employment professionals. Information, referral services and weekly support group all provided at no cost.
Schurig Center For Brain Injury Recovery – Larkspur, CA
A non-profit, post-acute therapeutic center offering an array of rehabilitative and supportive services designed specifically to help brain injury survivors and their families live fully, meaningfully, and happily. Serving adults ages 18 and up whose lives have been impacted by brain injury, and their families and caregivers.
Family Caregiver Alliance
National Center on Caregiving
(415) 434-3388 | (800) 445-8106
FCA CareNav: https://fca.cacrc.org/login
Services by State: https://www.caregiver.org/connecting-caregivers/services-by-state/
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers. For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s, and other debilitating health conditions that strike adults.
FCA Fact and Tip Sheets
A listing of all facts and tips is available online at www.caregiver.org/fact-sheets.
Brain Injury Handbook
A free, comprehensive Brain Injury Handbook, created by the Schurig Center for Brain Injury Recovery, is an excellent, practical resource to help navigate the rehabilitation process.
Research Update: Traumatic Brain Injury, Brainline.org: brainline.org
Traumatic Brain Injury, Center for Disease Control and Protection: cdc.gov
NINDS Traumatic Brain Injury Information Page, National Institute of Neurological Disorders and Stroke: ninds.nih.gov
This fact sheet was prepared by Family Caregiver Alliance and was reviewed by Catherine Sebold, communications specialist of the Brain Injury Association of America. Updated April, 2020, by Carol Welsh, MPA, CBIS, Services For Brain Injury, San Jose, CA.
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